Support and information

Here people talk about the support they received when someone close to them was discharged from hospital after being critically ill in an intensive care unit (ICU).

Many people said that, when the ill person was recovering at home, they'd received a lot of support from family. This included help from siblings, grown-up children and grandchildren. A few said that grown-up daughters had often helped look after the ill person as well as taking care of the home, and this had been extremely supportive. A 79-year-old man said that his wife's critical illness had made him and his wife realise just how much support they needed in times of crisis so they decided to move closer to their daughter. One woman said she'd had a lot of support from family throughout the time her husband had been in hospital and, when he'd come back home, either her nephew or her niece had stayed with her in case she needed help.

Retired from working for the milk marketing board, married with one adult daughter. Ethnic background/nationality: White British.

But actually we are leaving now. We decided that, the daughter wants us to go up to live nearer to them. And we have decided that this is the best way so we are going into a retirement village or a sheltered home or whatever you like to call it.

There is a lot more support there?

Yes and then we can get whatever care we want. We have actually bought the home and it has almost gone through and we have got an agreed sale on this place as well. So we are hoping that we can be moving within the next few weeks.

It will be good to be with your daughter who can help out?

Yes. This is about 13 miles from where she lives. So, not too near, but near enough you know.

And There will probably be quite a lot of support in the retirement home won't there?

Yes, whatever you need actually, they can supply. You know.

That will be good.

Yes.

Some people said they couldn't have got through without the help of friends. One woman said a friend and neighbour had been extremely supportive and had listened and offered advice whenever she'd been anxious. A few said that some friends had been more supportive than others and that these friendships had been strengthened by this. For some, colleagues had been as helpful as friends, giving support and encouragement.

A few participants said that other people who'd been in a similar situation had been very supportive. The partners of two people had to have leg amputations. They'd found it extremely helpful getting practical advice from others who'd gone through something similar several years earlier. It had also helped to know that they weren't alone.

Husband' The year before all of this happened we went to a Christian conference in mid Wales and there was a lady there who was a double amputee, who was the wife of a minister there [place name]. And so when [my wife] was going through the experiences that she was, I made contact with him and really drew on his experiences. And they wrote a very long email setting out the things that they thought were important. You know about contacting the OT and what pieces of equipment you might need in place and what support you might need and things like that. And that was very helpful.

We didn't necessarily find that we needed all of those ourselves. But it was useful to have that sort of check-list really of things that you might need. We have now got other friends who in a sense follow our footsteps, a couple from [place name] actually and the wife again had a double amputation and I think we have been able to pass out some tips to them.

Some people said they'd found it helpful talking to others who'd been through something similar and had joined support groups. Some support groups had been specifically for intensive care patients and their relatives. Others had been specific to the patient's condition, such as cancer support groups.

We then went, were invited back to follow-up with [the ICU nurse] at the hospital. And from there, that was a fantastic help. She helped us go through it, to see, you know to help us mentally more than anything else. Then we were invited back for a group of us to go to set up this, we've now set up a group called ICU Steps and from then on we've had support from our fellow colleagues in the group.

Would you have preferred to just change the subject or just not think about it at that time?

I think it was a case of just not wanting to think about it. And I think that was a lot of my problem. Because when I did start to think about it and talk about it I was fine. It was, I think it was a case of bottling it up and I shouldn't have done.

Did attending a support group help a lot with that?

Oh very much so. Oh very much so yeah. And I'm just grateful that it's been set up and we were able to talk to other people that have been in the same boat even. Other relatives we've talked about our experiences and it's been a great help.

Some said that, although they hadn't joined or attended a support group, it had been helpful talking to someone from a support group over the phone for reassurance or information. A few people said that, although they hadn't joined any support groups, they'd been given information about them by nurses and just knowing such groups existed had been helpful. One woman said she preferred not to join a support group in case it adversely influenced her or the way her son was recovering.

Nurse, married with three adult children. Ethnic background/nationality: White British.

I don't think I would want to belong to, the support group that we have been offered, there is one specifically for head injuries and there's an organisation as well and I've never felt that I wanted to belong to that because I feel that my son is evolving out of this and I don't want to feel that I know where he should be or I know what's coming. I want to remain supporting him in terms of where he's actually at. And I feel that if I belong to something like that then perhaps I would be closing a few doors. Does that make sense? I want to listen to him, to how he feels, to how he's coming out of it. So I haven't actually joined anything like that, not yet. But again, you know, maybe in time, but, I keep using this expression, 'it's too soon' [laughs].

Little by little he started to improve in his mental state and get more control back to his life. Whilst he was in the hospital he had had a visit from the head injury nurse from a support group. She'd been able to talk to him, and he could explain some of the things that he was feeling.

And would you recommend people to join a support group?

Yes, I think it's very useful. But I can understand in the early stages of you not wanting to leave the bedside. So that could be quite difficult. I think in those early stages having a website or a confidential phone line that you could call any time would really be beneficial for the moments when you're really low.

Like a confidential phone line in the hospital? Or outside the hospital? Or in a support group?

I think perhaps outside the hospital. Where it's away from all what you're seeing every day. That would be useful, you know. Just, or if you didn't want to talk to somebody, just a website where you could chat to people by email.

Did you ever chat to anybody by email? Or you've only just found out?

I've found out more since the recovery, of places to go and where you can get support.

And have you used these places? Well, you've got the support group you go to. Is there anything else that you've made use of to help?

Yes, there's MIND and all sorts of mental health charities. But it's just being aware of and telephone numbers that you can contact.

Did you ever receive any leaflets when you left the hospital?

No. I understand that there is a brochure now you get in ICU. But at the time that was in there, there wasn't anything like that.

Some people said they'd received support and information from health professionals. For some, ICU nurses had been particularly helpful and they praised the information and support they and the patient had received when they'd attended an ICU follow-up clinic. The aims of ICU follow-up include providing support and guidance for those patients who have had an extended stay in intensive care, often over two weeks. Medical, nursing and psychological support may be offered for up to a year after hospital discharge where appropriate. In the UK, there is no uniform ICU follow-up service and each hospital decides whether to have a follow-up clinic and how to run it, depending on time and resources. Many ICUs don't have follow-up clinics at all and, at present, these clinics are a relatively new though growing service.

I think we had something like three quarters of an hour with the nurse and then he took us back in again. And we were able to show my Dad during the quiet period, because they have a quiet period at the hospital, four until six, and we took my Dad in and we said, 'That is where your bed was Dad. That's where you were for five days. That is the bed that you kept trying to climb out of.'

What was really important and it came out of the blue, was to get the letter to say, inviting us back up to Intensive Care to have a feedback. I thought that was an excellent idea and really didn't expect it. I spoke to my sister but unfortunately she couldn't go. But I thought it was a really good idea.

And when you went back did your visit the ITU and the HDU?

Yes. We had about 45 minutes in the afternoon with the nurses chatting away to us and feedback and checking my Dad over. At one point my Dad had a cough and the nurse said, 'Are you all right?' He said he had a bit of a cold and I spoke to him the day before our meeting and he said, 'I have wrote to your Dad's doctor to let him know that it could be one part of his medication that he was on before his Intensive Care experience and they might consider changing that medication because that could be causing this little bit of a cough.' And I thought that was really good, you know, he was taking the care, the time out to do that. And I thought oh'

And was that also when you found out exactly what happened to your Dad, that he had had a mini stroke and then'?

I always thought he had had one of those. You know, for him to be comatose all night. I thought, I mentioned it. But they obviously didn't know at that time, it was in the early stages. It was a thought that I had had because I had seen him, particularly on the one around Easter time, and for me it was natural that something had happened during the night for him to go virtually unconscious and then whatever happened for it to develop into pneumonia. I always thought that but, to be told at a later date, confirmed what we were saying. What we did ask and it was something my sister had mentioned, is could it every happen again in that way? Because my Dad had had problems with his respiration, was he now susceptible to it because of his age and this had happened. And the feedback was 'no, no more or less than anybody else in the general population. Or no more than anyone else in the general population.' So that was comforting.

A few people praised the support and information they'd received from occupational therapists and GPs. One woman said that her GP had referred her for counselling after her son's illness, which she'd found extremely beneficial. Another said she'd received counselling from a service provided by her employers. This had helped her discuss tensions in the family that she'd found difficult when her husband had been in ICU.

The thing that sort of - the straw that broke the camel's back kind of, I had been on the phone to his Mum and she has this annoying habit of questioning everything you say, which is one thing, and I kind of thought well if she would shut up and listen she wouldn't need to keep asking. Which was' it just triggered a chain of emotions and things and I just went into free fall really. I just burst into tears and I was angry and I was upset and I was finding it difficult to talk to [my husband] about that because it is his Mum. And his Dad died a few years ago and he is very fond of his Mum. That sort of thing.

So he sort of tried to do his best to help. I actually asked him to go and get a friend of mine to come round and I sort of sat and chatted with her for a bit. She sat on the kitchen floor which is where I had ended up by then because my legs went. I was so overcome and we talked for about an hour I suppose, just sitting on the kitchen floor, and sort of everything spilled out. And I knew sooner or later that this was going to happen. But it was good to get off my chest in some ways. And I had used the company counselling service before when I had some emotional problem and I knew they were there and I thought this would be a good time to talk to somebody out of the loop.

And you found the counselling helpful. Did you just have one session or you went back for more?

I just had one session and it was just to sort of thrash everything out and sort of go over what had happened and just to be reassured that my reactions were normal really and they were able to do that for me so' I did feel better after that.

About a month after [my husband] came home, I had a, it really hit me one day. We had tears and I just really got upset and my really good friend and neighbour came in and helped me and talked me through it and things at the time. And the company I work for also has a Welfare Scheme that has a company counsellor and I spoke to them. Really because I needed to speak to somebody outside the loop. And they were very reassuring in fact that what I was going through, I seemed perfectly normal, and the counsellor found that [my husband's] brother's attitude was somewhat out of order as well. In fact he said, 'I am embarrassed for him' [laughs]. So I didn't feel so bad then. Still haven't seen [my husband's] brother since then, although [my husband] has. We all went up to his Mum's and we are due to go up there this following weekend because [my husband's] Mum's birthday and [my husband's] birthday are within a week of each other and I have to say I have still got a great feeling of being unsure about how I am going to handle the situation. I still find it difficult but not as bad and I think it is a case really just of time being a healer and letting things go.

For some people, their religion, spirituality or faith in God had helped them when the patient had been in ICU as well as afterwards. Many said friends and family had been praying for the ill person and they'd found this supportive. Some said their faith had been strengthened because they felt their prayers had been answered or because the patient had made a miraculous recovery after being so close to death. One woman, whose husband had died in ICU, said she'd become more interested in Buddhism and Spiritualism and both had helped her accept what had happened andmove forwards gradually.

I have got very involved with the Spiritualist Church. By accident, because I didn't ever believe in anything before. In fact after he died I was very, very angry. Very angry with God. I didn't understand how any God that is supposed to be caring could ever, ever do this. Because I am an okay person, you know, I really, really try to be nice to everybody. And he was a really, really nice guy. And I just didn't understand at all. And then I was in the library getting some books on grief and I came across this book by, I think she's called Rita Rogers that's it, and it was about, it was called 'Grieving through Spiritualism'. So it was a sort of mixture of both. And I got this book out and I read it and it was absolutely fantastic. It really, really helped me. So I thought oh this is all right, I will see if I can get a little bit more involved in this. So there is a Spiritualist church just up there actually. Just a little bit up the road. So I have been going there and I have been sort of veering over towards Buddhism. So it has definitely, definitely helped me and it has also sparked an interest in things I had never been interested in before. So'

Had you believed in God before or had any spiritual'?

As a child I was a churchgoer, up until I was about 15 and then you know you sort of give over don't you. And when he was ill, really, really ill I prayed all the time, all the time, constantly I was in the chapel at the hospital and after he died I was just stunned that nobody had listened to me, you know, I thought how can this be. But I am sort of developing now more of an understanding I think.

What kind of understanding has been helpful from a Spiritualist aspect. Has it helped you look at things differently?

I believe now that this earth is a classroom and that we are all here to learn and to evolve from our previous existences and that if you have got a lesson to either teach or learn then you do it and then you go. And that is it really.

One woman described becoming 'less religious' in terms of attending church, although she still felt she had a spiritual faith.

Horticulturalist, married with four children. Ethnic background/nationality: White British.

I suppose actually in a way I've become less religious. I used to go to church a lot. I used to insist that the children went every Sunday from the middle of November right through to Christmas. Otherwise there was no point having Christmas, because it wasn't just all about presents. And we always went sort of during the Easter period.

But I think that, well, I haven't been to church.

I think, I mean our local vicar is sweet. And I was very involved in the church when we were in Wiltshire, when [our son] was originally born. And they were great and very supportive and things, and I was very appreciative. And then we came up here and it was sort of a different sort of area. But then, then [another vicar] came about six years ago I suppose. And she was a brilliant, she was a lovely, sweet girl, who is our local vicar. And I was very much sort of churchy and sort of going and all that sort of thing. And she was sweet when [our son] was in Intensive Care and she came to visit and whatever. But we can't go in the winter now because he gets too cold. And there's only about six people in the congregation anyway, so they don't heat the church. And I sort of have moved away from it really.

That's quite fascinating. Because a lot of people that we've spoken to have said they've gone the other way around. That because of the Intensive Care experience and, you know, the whole illness experience, and even just stopping and having to think, has made them more religious or more spiritual. So you feel you've become less religious or less going to church but would you say your beliefs are still the same?

No, I think my beliefs are less. I believe that if you're a good Christian, I don't believe in'[dog interupts]. What do I believe? I don't like to say I don't believe in God because, just in case. But I don't believe he's a big lovely man with a big grey beard like I used to. I believe there is something there, but I don't quite know what it is. But I think that being a true Christian is far more about doing things for other people and much more how you lead your life than going to church every Sunday. Years ago I did go to church every Sunday in [place name] as I said before. And on Monday morning I was going across the road to post a letter. And this poor lady fell off the pavement, and I rushed to pick her up and sort her out. And three people who'd been sitting in front of me in church the day before ignored her. To me, they are not true Christians.

And my mother is a true Christian, and she hardly ever goes to church. My father's a true Christian, and he goes to church three times a week. So I don't think it's about bums on seats. And I think if there is a big beardy chap up there, then I think he knows who's good and who isn't good.